Hubby kept me updated while I was at home and he thought things were going well. Her numbers had started to rise by the time he left for the evening, but nobody seemed to be concerned. There weren’t any middle of the night phone calls so we thought we were safe. When he arrived back at the hospital the following morning everything looked the same. I put J on the bus and then headed back to the hospital. At 1015 (I was 15 minutes away from UVA) Hubby called asking how far out I was. The news wasn’t good. He didn’t want to tell me over the phone; just hurry up and come in.
I arrived just as the NICU doctors were rounding. They pretty much repeated the same awful conversation I had with them on Saturday morning, except without hope. They’re going to have a meeting at 130 to talk about what they can do for Zoe from here. But we should be prepared that there is nothing more that they can do for her. They’ll come and get us at 2 pm and let us know what was discussed. I wrote, “Things are bad. Her fluids are worse. They just did another echo and they’re going to convene at 130 to talk about the next step–try new medications, try the ECMO or just let her go.”
The next 3 and a half hours were excruciating. I sat next to her with the pinky of my left hand up against her left arm and my head resting on her bed next to her poor deformed ear and talked and talked and talked like I had done every day for the last seven days. All of the other days I had told her stories. I filled her in on every detail about J and C, starting with their births and any funny stories or anecdotes I could remember about them. About C’s love of trucks and choo-choos and J’s obsession with Disney Princesses. I told her she needed to be a nice mix of the two–into just a little bit of everything. I told her all about J’s health scare 4 years ago and how scary and traumatizing it was, but that it was nothing compared to this. I told her that Moody didn’t really die like we told J; we actually just gave him back to his rescue. And her first sentence had better not be “Hey J! Your dog didn’t actually die; Mama and Dad just gave him away and then lied to you!”. I told her stories from my childhood and filled her in on all of her aunts and uncles and Pappy and Memaw. I told her about my mom and how I would never leave her like that. I told her all about how I met Hubby, back when he was just the “meat man”. About our wedding. About all of the places we have lived and the places we’re going to go. About beach trips. About fake aunties. About all of our dogs, past and present, and what happened to each of them. I told her absolutely anything I could think of over those seven days. I told her things that I had never told anyone else before. One of the NICU doctors came over to check on her one day and he told me, “I love how you just sit here and talk to her all day. Keep it up.” I also read “Baby Bear Baby Bear What do You See?” to her about 6,000 times.
But on Monday during those three and a half hours I just told her over and over again that I have complete and total faith that she was going to pull through this. That she WILL pull through this. I told her that she comes from a very strong stock and she was the strongest of all. I told her that she had better hurry up and get better because she was using up all of her allotted “worry Mama” time–now when she was a teenager she could never be out past curfew or give me grief about anything at all. I talked to her about what I thought she was going to be like when she grew up–strong, fearless, and a complete and total shithead. That she would be an early walker and early talker. And that after this experience she was either going to become a doctor herself or absolutely hate all doctors. About being there for the first time she falls in love. The first time her heart is broken. Her wedding. The birth of her children. Hubby agreed that she could have not just one but two ponies. I told her that she could get away with absolutely anything with me–I would never be mad at her for anything. Ever. Any time a bad thought would start to creep into my head I would shake it out and repeat over and over again that she was going to be okay. I sang her the chorus to “Three Little Birds” over and over again…”Don’t worry about a thing cause everything little thing gonna be alright. Singing don’t worry about a thing cause everything little thing gonna be alright.”… I made up songs to the tune of popular nursery rhymes all about her. This was my version of Twinkle Twinkle Little Star that I sang about a zillion times in that three and a half hours:
Twinkle Twinkle Little Zoe
How we love you so
You are so sweet and very strong
You’re going to be just fine
Twinkle Twinkle Little Zoe
How we love you so.
I never said they were creative or good versions of the original songs, okay??
At 2 the nurse asked us to follow her. We walked to the other side of the 7th floor. Hubby told me later that was when he knew what they were going to say; the rest of the time they talked to us at her bedside. Along the way we ran into one of the NICU doctors that had been with us since the beginning of our stay at UVA, Brooke. She gave me a big hug and said that she was off of work but she was going to be right here when we got out and to let her know our decision. We walked into the conference room and sat down. There was another NICU fellow who had been with us since the beginning, Matt. One of the heads of NICU. A NICU resident. The two cardiologists we had been working with since our arrival. A fellow from renal. A social worker. And Zoe’s nurse.
Matt took the lead. He explained that we have three options. First, we continue on the path that we’re on and pray for a miracle. We can let her stay like this for a couple of days and see if she pulls through on her own. But because her fluid levels are continuing to increase rapidly and her heart and lungs still aren’t working properly, this is extremely unlikely and would most likely lead to organ failure.
Second, we try the ECMO. There were several problems with this choice though. They would need to consult with the surgeons to see if they would even be able to do the procedure. They would have to go through the neck and, as I pointed out, Zoe no longer has a neck. Her head and chest were so puffy that her neck has completely disappeared. Even if the surgeons are able to do it, we would most likely end up exactly where we are now after the procedure is over. The problem is that her capillaries aren’t working properly and the fluid is leaking out into her body. ECMO wouldn’t be able to fix that. We would probably be in the exact same boat we’re in now a month down the road.
Third, we let her go. We unhook everything and let her go in peace. We accept the fact that she was given a shit body and let nature take its course (my words obviously, not his).
One of the cardiologists wanted me to know two things. First, that this wasn’t my fault. I didn’t eat wrong, sleep wrong, do anything wrong. She was just born this way and nothing would have changed that. Although I had been told this a few times throughout this whole process, I didn’t truly believe it until then. I needed to hear those words. I needed to know that I didn’t do anything wrong. Especially because I worked out my entire pregnancy, up until the last two weeks, and I probably pushed myself too hard. And the pillow I used to keep myself off of my back was flat, not puffy, so I was worried that because it wasn’t fluffy enough I was on my back too much while I slept. Or the two jars of Nutella I consumed during her last 4 weeks in the womb. Or a million other things that had run through my head during the last week that I could have done wrong. But because this was genetic I didn’t do anything wrong. She also told me that it wouldn’t have mattered if she had been transferred here straight away, or even if she had been born here. They would have taken the same steps the other two hospitals had. And the outcome would have been the same. This was another thing Hubby and I had discussed and we were relieved to have that concern put to bed.
Then we asked our questions. I wanted to know (and I’m proud of myself for making a joke of it) why they couldn’t just prick her with a needle and let all of the fluids ooze out. They said that they had considered doing just that (but in a medical way) but it wasn’t going to work. There was just too much fluid.
At one point a heart transplant had been brought up, so I asked about that. But the waiting list for a neonatal heart is at least 6 months, time Zoe doesn’t have. Plus she probably wouldn’t be a candidate for the list anyway since she has other problems.
I wanted to hold onto the miracle idea. So I specifically asked about the fluid–if we managed to get rid of the fluid where did the rest of her body stand? Would she be okay? The answer was probably not. Her heart should have started to repair itself by now and the fact that it hadn’t meant that it probably never would. We were so far past the gestational diabetes diagnosis that they knew that wasn’t the problem anymore. They didn’t know what the cause was, but whatever it was is irreparable.
Hubby asked a couple of questions too, none of which I can remember. The bottom line was that she just had a crap circulation system–bad heart, bad lungs and bad capillaries. After we finished with our questions everyone stood up. They said we could keep the room as long as we wanted and to just let Matt know our decision once we returned to the NICU.
We both already knew what we had to do. We sat in silence for what felt like an eternity, but was probably only a couple of minutes…probably because neither of us wanted to be the one to say it out loud. To make it real. To say the words, “We have to let our baby girl die.” Because that was our only choice. She was in pain. And there was nothing that could be done. The doctors tried everything they could possibly think of but she just wasn’t meant for this world. And we needed to let her go. It was the right thing to do. Anything else would be completely selfish.
I don’t have the slightest idea how long we sat there crying and holding on another. It could have been 10 minutes; it could have been an hour. Finally we stood up and went back to the NICU. We found Matt and told him our decision. He reiterated that we were making the right choice and it showed what good parents we were for choosing Zoe over ourselves. Now we needed to decide when. Did we want J to come up? This was something neither of us had discussed. Would it be better or worse for J? We ultimately decided no, she shouldn’t be here. I wish she would’ve been able to meet Zoe, but not like this. Plus they were an hour and a half away and now that the decision had been made, we were ready to just do it. I couldn’t sit around for another hour and a half and watch her breathe, knowing that the end was imminent. That may have been selfish, but J’s therapist can deal with that 20 years down the road.
We also had to decide if we wanted to get her baptized. As I said previously, we aren’t religious. Hubby is Catholic (super lapsed) and baptized, but I’m not. Neither of our other two children are. At first he said yes, and then no. I spoke up and said, “You know what? Let’s just do it. I don’t know what’s out there but I do know that I don’t want to screw Zoe. Just in case. It certainly isn’t going to do any harm.”
Matt explained that they were going to move Zoe into one of the rooms in the back so we could have some privacy. We could each hold her for as long as we wanted and then they would unhook everything and let her go. I called my father to let him know. Hubby called his parents. I sent a message to my friends: “We’re going to let her go.” We stood by Zoe’s bed as they got her ready for her last transfer.
In the meantime a bunch of people came over to talk to us. The chaplain showed up and waited with us. Her nurse from the previous two days came over to give us hugs and her condolences. The social worker stopped by with a basket of stuff to give J “from Zoe”. Brooke gave us hugs and said that we were doing the right thing and she was so sorry. A grief counselor talked to us about how to talk to J. She said there were five things to remember. 1) Use the word death. Kids take things literally. 2) Explain that death is irreversible. Zoe will not be coming back. 3) Cry in front of her. Explain what’s happening and why we’re sad and reiterate that it’s okay that she’s sad. 4) Make sure she knows that this isn’t because of anything she did. This is not her fault. 5) Of course I can’t remember the fifth thing. Give me a minute and maybe it’ll come… OH! That everyone dies.
They gave us the option of seeing if any of the photographers in the area were free. They will donate their time and take pictures and give you the print release all for free. We opted not to do it. Not because I was uncomfortable with someone being in the room with us throughout everything–frankly, neither of us would have even noticed–but just because I figured that my iPad would do just fine and there were only so many pictures to take. I don’t regret my decision per se, but I do wish I had more photos. I have 39 pictures of Zoe and that’s not enough. But that’s not something that a photographer could have remedied. He/she can’t give me pictures of her first smile…crawling…taking her first steps…her first day of school…losing her first tooth…her first dance…her wedding…her children. Nobody can give that to us.
No idea how long it took for everything to be moved over. It felt like hours but was probably more like 45 minutes. We followed Zoe down the hall to one of the rooming in rooms. It wasn’t the same one that I had stayed in that first night; fortunately they have two of those rooms. But if I would have had any idea that was what those rooms were used for–for grieving parents to have a little privacy with their child before he/she is gone forever–I never would’ve stayed there with all of that bad juju. I know the rooms are used for other things too, like when a baby is released to go home, but that doesn’t matter.
I held her first. It took a nurse and two respiratory therapists to get her on my lap, but it was worth it. The moment they plunked her down I said, “Holy shit she’s heavy!”. Well, she was!!
The chaplain came in and baptized her for us.
The lactation consultants came in to talk to me about my breast milk. My initial reaction was to hurry up and get rid of it, but when they asked what I wanted done with the 100 ounces of milk I already had stored in the freezer just waiting for Zoe to pull through and use it, they mentioned donation. That seemed like a nice thing to do–let as much good come out of this situation as possible. Help other babies and mothers who were going to be able to go home at some point. They gave me the information for the King’s Daughter Milk Bank. I decided I was going to continue to pump until my supply dried up and then donate all of it at once.
I don’t know how long I held her, but it wasn’t long enough. It would never be long enough. I stroked her cheek, told her how beautiful she was, how much I loved her and how I was going to miss her. I don’t know why I’m smiling. Force of habit I suppose. But I hate looking at those pictures and seeing that stupid grin on my face. It makes me angry at myself.
After what seemed like an unbelievably short amount of time, we called the nurse back in so we could switch her over to Hubby. It was his first and only time holding her.Once he was “ready” (ha, like either of us could ever be ready for that moment) we called the nurse in again. I remember him asking me at one point while he was a holding her to call the nurse back in, but I said not yet. I knew that there was never going to be a right time, but I just needed a few more minutes. Just a few.
She came back with the on call NICU doctor, one we had never met before. He expressed his condolences and then explained what would happen. They would unhook her from everything except the pain medication. Once she was off of everything there was no telling how long it would take for her to pass, but based on her condition it probably wouldn’t be very long. About a minute after they finished Hubby thought she was gone. I was devastated. It couldn’t happen that fast, it just couldn’t. I thought we were going to have minutes, not seconds. And I know that no matter what I wasnt going to be prepared; no matter what there was no “good time”. But I wasn’t expecting it to be that quickly. It turned out that she hadn’t passed yet. Her heart was down to only 40 beats per minute. She was so fluidous that we couldn’t see her chest moving up and down or feel her heart beating–that was why Hubby thought she had already left us. The doctor and nurse decided to give us some privacy; they would watch the monitor and check back in a little bit.
We sat there for another 15 minutes. Talking to her, telling her how much we loved her and were going to miss her. That she needed to be J and C’s guardian angel and keep an eye out for them. And the more we sat there with her, looking at her, seeing her without all of the tubes and wires, feeling her, the more it reinforced that we were making the right decision. Her ears had nearly disappeared into her head. She didn’t have a neck. Hubby tried to put her arm down so it was next to her stomach, but it wouldn’t stay. Her back, which we had never seen, was purple and looked bruised from the lack of circulation and the fluids. She had bruises all over her. It was amazing how much she had deteriorated just since that morning. The doctor checked her heart rate again. Down to 20. They waited with us. A few minutes later he checked it again and announced that she was gone. At 620 pm, Monday February 22nd an excruciating pain overtook us. We will never be the same. My beautiful, perfect baby girl is gone forever. She looked just like her brother and sister when they were born–a full head of dark hair. Slate blue eyes (which would eventually change to brown). The same messed up pinky toe J has (but not C). That tiny nose. The same lips. Big chipmunk cheeks. But she didn’t look like that anymore. She still looked beautiful, but a painful beautiful. And that will be how we will remember her forever.
The next part took awhile. A second nurse came in to help out. They made a plaster of her hand and foot for us, which were absolutely beautiful.
The nurse gave me a washcloth and some baby oil to clean her up. Her first bath (which with all of the gunk, blood, snot, fluids and plaster all over her she desperately needed it!). She gave me a pair of PJs to put on her. Size 9 months. J and C were almost a year before they fit into that size!I always thought seeing pictures of people holding dead babies was creepy. Until I had my own. Not creepy in the slightest bit.
The doctor talked to us about an autopsy. We opted for a full autopsy in hopes it will give us some answers as to what the cause was. Not because it’s going to change anything, but because we need to know before we try to have any other children if this is going to be a concern in the future. Because we can’t do it again. We just can’t. And honestly also because I need to know for sure that this wasn’t my fault. Although I believed with all my heart what the cardiologist told me–that I didn’t do anything wrong–at the time, doubt has started to creep back in. Maybe I overheated while working out. Maybe my heart rate was too high. I do know that I pushed myself too hard and I’m terrified that I’m the reason this happened. I don’t think so, but I need to know for sure. I need to be told that it was genetic. It’s the only way I’m going to be able to completely release the guilt. The results should be ready for us in a few weeks.
We also asked about organ donation. Unfortunately it turned out Zoe wasn’t suitable. Although they could use her heart valves to help another baby, because we were having an autopsy it wasn’t possible. They have to garner the valves themselves, but the medical examiner needs to perform the autopsy himself so it just wouldn’t work. I really wish we would have been able to do that, but knowing if this is something we have to be concerned about in the future takes precedence.
After everything was finished I reluctantly gave her back to the nurse. She took Zoe away.
We went back to the Ronald McDonald house to clear out our stuff and check out. We had to drive back separately since we both had vehicles there. And neither of us ever want to come back to Charlottesville, especially UVA, ever again. We drove home in a fog. I barely made it. My absolutely amazing Irish twin came over minutes after we pulled into the driveway and we went for a walk in the freezing cold while I sobbed and cursed and told her everything.
Before bed I went in and looked at my two children, now my only children, fast asleep in their beds. C was in his crib with his 10 stuffed animals (not an exaggeration). I nearly had a heart attack when I couldn’t find him at first–I had to turn on the hallway light and look again. He was sleeping with a brand new huge stuffed duck literally on top of him. J sat up and started talking when I opened her door. Terrified that I had woken her up I froze, but she was just talking complete nonsense in her sleep.
The next morning I heard J come out of her room and start to go downstairs. I called her in and told her to climb in bed with us. She immediately asked about Zoe since both of us were home. I said, “You know how Zoe was in the hospital because she was very sick, right? And sometimes doctors do their best, but they just can’t help sick people and they die. That’s what happened to Zoe. She died.” J immediately burst into tears. I hugged her and we cried together. She told me that she never even got to meet Zoe. And she wants a new baby. Right now. I told her that I felt the same way. And I’m very sorry that she never got to meet her little sister. And then I explained all about guardian angels and that now Zoe is her and C’s angel. She’s going to watch over them and keep them safe. We talked about angels a lot over the next few days as J tried to understand. She really didn’t (and still doesn’t) like talking about it. She doesn’t like anything bad and doesn’t like to acknowledge bad things. She burst into tears the next day when I told her that I wrote a note telling her teacher what happened. She said, “But I didn’t want you to tell her that Zoe died! I just wanted you to tell her that you were home and that’s all!”. I explained that she doesn’t have to talk about it if she doesn’t want to; Mrs. Smith will listen if she does want to talk, but she won’t say anything to J if she doesn’t want to talk. Over the next few days as I continued to cry constantly J informed me that “We can just have another baby. And it’ll be a girl. And it’ll look just like Zoe. And act just like Zoe. And we can name her Zoe. And then you won’t be sad anymore.” If only it was that simple…
After we got downstairs that first morning I gave J her Zoe basket. One of the things inside was a bear. I began calling Zoe “Zoe Bear” the second day in the hospital and I couldn’t help but think how fitting it was that J now has her own Zoe bear. Even through all of this there are a few things that I thank my lucky stars for. First: we had 8 days with her. I had eight days to tell her my life story. To talk to her. Touch her. See her. Eight days wasn’t nearly enough, but it was better than nothing at all.
Second: we have J and C. I can’t even imagine what this would have been like if we didn’t have those two to come home to. Especially that first night. I needed to see them, to touch them, to know that I still had two beautiful perfect amazing wonderful children to care for. To love. To hold. To watch grow up. Although it has its bittersweet moments. Like when the four of us were all playing together that first full day home, both kids laughing hysterically. Hubby and I caught each other’s eye and I could see the same thought cross our minds at the same time: “This isn’t right. There shouldn’t be two of them, there should be three. Three giggling children. And it’s never going to be the way that it should.”
Third: this was our decision. As difficult and heart wrenching as it was to be the people who have to decide to end a baby’s life, I’m glad that it was our choice. If she would have just died on her own we would have had a much more difficult time accepting it. Because as awful and painful as it is, it was the right decision. That poor poor baby didn’t need to be in this world in all of that pain a moment longer than she was. And we can take comfort from the fact that she really is in a better place. Even if I don’t understand why it had to happen.
Fourth: J and C have a guardian angel now. They have someone to watch over them. I may not believe in God, but I do believe in guardians. That good day that Zoe had, the one where I went home, completely ruined that for me. Why get our hopes up? Why destroy us with the news that she may not make it, and then allow her to get better, to let us think that we were out of the woods and making progress just to rip it all away, making it even worse than it was before? Our poor Zoe could have been out of pain 36 hours earlier. I’m not angry at God. I just don’t think there is one. I’m not trying to start a theological debate or push my opinions onto anyone else. I’m glad that other people have faith, that they believe there’s a higher power and can take comfort from that. I just don’t. But that’s a major digression. I do take comfort in my belief that Zoe is watching out for them.
Fifth: Hubby and I have a strong relationship. We have each other to lean on. Because I wouldn’t be able to get through this without him, that’s for sure.
Sixth: there wasn’t a nursery to tear down. We’re moving in three months so Zoe was just going to sleep in a pack and play in the spare room. Once we get to the new house everyone is going to get new furniture for their new rooms–J will move to a single bed, C will take the toddler bed and all of J’s furniture and Zoe would have had the nursery. And because we didn’t find out the sex of the baby, there weren’t any baby clothes to put away. Only the two going home outfits. I bought a new car seat for her, along with a bunch of size 1 diapers, but fortunately my sister is due with their first baby in August and so I was able to just give that stuff to her. I can’t even imagine having to tear a nursery down.
Seventh: I’m only 8 pounds shy of my pre pregnancy weight. I think this has helped in a lot of situations where people don’t know/see me very often. I couldn’t possibly be the same person who was hugely pregnant just a few short weeks ago…there’s no baby weight. Or baby.
Don’t get me wrong. I would give anything to have Zoe sitting right here on my chest as I type this. To be exhausted and sleep deprived. I would trade someone watching over J and C for that. I would weigh 200 pounds for that. But there are some hidden blessings and I need to take them where I can find them. This is an awful situation that I would never wish on my worst enemy. But you have to find the good in it, no matter how small. Because it still could have been worse. Our family may not ever be complete now, but we’re still a family.