I don’t even know where to begin. Zoe Lee was born February 14th at 350 am. She passed away at 620 pm on February 22nd. This is her story.
I started having contractions off and on beginning Friday the 12th. I don’t know if they were Braxton Hicks or just random contractions or what, but I knew the baby was going to be making her appearance pretty soon. By Saturday they were stronger and coming more regularly. I still wasn’t sure when to go to the hospital though; my contractions would be pretty steady for about an hour and then fizzle out or become longer or I would have a weak one in between two stronger ones. Hubby was super paranoid though and after I wavered back and forth for several hours, he finally forced me to go to the hospital. If it were up to me we would’ve waited several more hours, but he was concerned that he would have to speed the 45 minutes to the hospital and the baby would be delivered by a state cop. Weirdo.
We arrived around 930 pm. I was checked in, shown to my room and put on my gown. The nurse said she would page the anesthesiologist for me so I could get my epidural, but I opted to wait for awhile. By this point my contractions had nearly stopped and the ones I were having weren’t very painful. It seemed pointless to get the damn thing at that moment in time. My OB was paged and decided to come in (my normal OB had a family emergency so I was switched to another one in the practice a few weeks back. I had only met this guy twice before and I told him it was unnecessary to make an appearance; I’d just use the on call OB instead. He decided to come in anyway). Several hours passed. I cursed Hubby the whole time, making sure to point out that he could’ve been sleeping in his own bed for those hours instead of cramped on the hospital room couch being interrupted by nurses every 20 minutes. Served him right! I finally asked for my epidural around 3 am. At 335 my OB came in and didn’t even acknowledge my presence. Did I mention that I had only met him twice and really wasn’t a big fan of his? Hence why I didn’t really feel the need for him to come in and deliver my baby. At 340 I was dilated and ready to push. The next 10 minutes were seriously the most awkward of my life. Minus the nurse telling me when to push and counting for me, there was complete silence in the room. Nobody was saying anything at all. I definitely need to bring my iPod next time.
Our perfect baby girl popped out at 350 am. Or should I say “pooped” out?! There was shit everywhere–literally. On my legs, the sheets, the floor, my arm somehow…it was hilarious. Her first nickname was “shithead”. Between that and the amount of fluid that came out with her it was quite the gross birth. The fluid was unlike anything I had ever experienced. They broke my water and there was a constant stream coming out for a half hour afterwards. I thought I was peeing myself. And then another couple of gallons came out with her. Everything was completely and totally soaked; it was disgusting.
Besides all that, though, we knew immediately there was something wrong. First, everyone in the room knew that we didn’t know if we were having a boy or a girl but nobody told us what she was. After about a minute I had to ask. Second, her umbilical cord was very short. Third, she wasn’t crying. Fourth, she was blue. After the doctor cut the umbilical cord the nurse took her straight to the warming station. Which was a huge deal because this hospital touted how into the “magic hour” they are–that babies will go straight to the mother’s chest and cleaning them off and weighing them and vitals and all of that stuff could wait until later. She would let out a strangled cry every minute or so. During this time the OB asked me if she had been acting any differently in the last week or so in the womb. I said, “Yes, she wasn’t moving as often.”, to which he replied, “Well you should’ve told me that.” And those were the only words he spoke to me during the entire time. I never saw him again and if I have my way I never will. Especially because I did tell him that she was moving less often–four days earlier at my last appointment. And he told me it was just because she was bigger and running out of room. Fucking asshole.
After about 10 minutes the nurse brought her over to us and said that she had some fluid in her lungs and she had to be taken away for a little bit. We each gave her a quick kiss and then she was gone. I would have given anything if I had known that was going to be my one and only time to hold her without a bunch of wires. I would’ve insisted on taking her for a few minutes.
We had our girl names narrowed down to two by that point: Zoe and Morgan. The decision was already made for us; Zoe means life. It was fitting. Her middle name was a no-brainer: all of our children’s middle names are the place where they were born (J’s is Riley for Fort Riley, Kansas and C’s is Orleans for Ottawa, Ontario). The nurse came in about an hour later to let us know that Zoe was doing okay. She had me guess how big she was and I said, “I don’t know, like 7 and a half pounds?” Nope, she was 9 pounds 6 ounces!! She asked if we would like for her to take some pictures for us since we couldn’t go and see her. Obviously the answer was yes. Honestly the next 7 and a half days are a blur. I really don’t remember what happened when. I was messaging my girlfriends a couple of times a day to keep them posted on what was going on, so I’m going to rely heavily on those messages to try to piece it together.
We didn’t tell anyone that she had made her grand appearance until around 8 am. Both because she was born in the middle of the night and we didn’t feel the need to wake anyone up, and because we didn’t have the slightest idea what was happening with her. All we knew was that she had some fluid in her lungs, which happens relatively often and wasn’t a big deal. I sent my two best friends this message through FB at 7 am: “So she’s a girl! Zoe Lee, born 350 am 9 lb 6 oz, 20 in. No pics yet. Sorry for the delay in an update…I had her for about 15 sec after she came before they had to take her to the Nursery and now she’s off to the NICU. She came out blue and with a bunch of fluid in her lungs. They did a chest X-ray and it looks like it isn’t anything more than that, but they’re running her blood to check for pneumonia or other infections. She also has a small heart murmur so she had an echocardiogram done and we’re waiting for those results. Her breathing isn’t getting any better so they’re moving her to the NICU to put in an IV and give her a mask thing. On the plus side once she’s settled we can at least go in there. The doc said he doesn’t know how long it will take for the fluid to clear out–could be hours or days. I’ll keep you posted!”
This is what I posted on FB around 1 pm Sunday afternoon: “It’s a girl!! Zoe Lee Delp, born 350 am. 9 pounds, 6 ounces and 20 inches! There are some complications so she’s been in the NICU since her grand arrival, but she’s doing well. Once she works out the fluid in her lungs she should be released, which will hopefully be in a few days. She looks super sick with all of the tubes in, so these are the best pictures I have for now! I’ll keep everyone updated as we know more.”
I can’t even remember exactly when we found out about the thick heart. Must not have been too much later because I sent this message at 930 am: “We just got in to see her! They have to put a tube in her umbilical cord and then they’re done messing with her. We heard back from the cardiologist and apparently she has a ‘thick heart’, whatever that means lol. Not serious at least…just something we’ll have to follow up with a few extra appointments to make sure it corrects itself. So now it’s just a waiting game to see when she’s able to clear out that fluid. After the tube goes in her belly we’ll be able to hang out with her whenever we want in the NICU at least. So everything is looking good! She looks so tiny and sad with all the wires coming out!” She had a CPAP on her to help her breathe. They had to stick her a few times to get her IV in. They tried for a belly button line but were unable to get it.
The cardiologist came in on Monday morning to do an echocardiogram to look at her heart again. By this point I was asked about 16 times if I had been diagnosed with gestational diabetes (which I never was. I failed the initial test but passed the 3 hour one with flying colors). Apparently her large size and her thick heart were two big indicators of the mother having diabetes. They were just assuming either it was missed or I was a transient case. Either way they were confident that her heart was going to begin to shrink back down all on its own over the next few days. She was going to have to remain in the NICU for at least a week for observation, however.
At this point we weren’t too worried. With the fluid in her lungs and her thick heart she obviously wasn’t in great shape, but we kept on being told that everything would clear up on its own; it just needed time. I wrote, “There are two main problems. One is a thick wall that’s preventing the blood from flowing in and out as easily as normal. Normally it thins on its own. The other is that the blood is traveling the wrong way in one of the ventricles–the blue blood is trying to go back where the red blood is. That should also correct itself. And there’s the possibility that the fluid on her lungs is exasperating the situation, so hopefully as that clears up so will the heart problems.”
I said something in passing to one of the nurses about how I couldn’t wait to hold her and she said that Zoe wasn’t currently hooked up to anything important so I could hold her for a bit now if I wanted to. I had her for about 30 minutes and it was the best half hour of my life. I wish I would’ve known that was going to be the second to last time she was going to be in my arms…
I was going to be discharged from the hospital on Tuesday and we were trying to figure out the logistics of driving back and forth between home and the hospital (it was 45 minutes away) and what was going to happen with J and C.
Our worlds came crashing down for the first time Tuesday morning. Zoe was declining. The hospital that we were at was a small one; the NICU only had room for 6 babies and their capabilities weren’t great. They were giving her Surfactin for the fluid in her lungs, but she was getting worse. The decision was made to transfer her across town to their sister hospital. Although she wasn’t at a critical point yet, they wanted to transfer her now while she was stable and before she became critical. Just in case. The NICU at St Marys is much larger and they have more experience dealing with critical issues. My father had to go back to work on Monday (he had come down for the birth to stay home with J and C) so Jeff had left the hospital the night before, which meant I was receiving this news alone. The plan was to move her around 2 pm. I called Jeff and he and C drove up.
The transfer was quite the sight to see. I wish I would’ve had my camera or iPad or something so I could’ve documented it. A huge ambulance pulled up and five EMTs/nurses got out. They had a giant incubator for Zoe to go into. It took them an hour to get the paperwork straight, get all of her medications in order, unhook her, put her in the bed, strap her down and rehook her IVs. It was absolutely amazing. I made sure to thank them and tell them what an amazing job they were doing about a million times. We watched her roll away in the ambulance and then we headed home. I took a fast shower, pumped and then drove up to the next NICU, which was also 45 minutes away.
This NICU doctor was much more frank with me. His exact words were “She is very critical. Stable right now, but that could change. I am very very concerned.” Things weren’t good. He was tearing up telling me this, which really hit home how serious this situation was. This was the first time anyone had said that she may not make it; that this could be life threatening. This is what I wrote as I left the NICU that night, “I’m at St Marys, just getting ready to leave. I just spoke with the millionth doctor. Things are bad. Really fucking bad. Apparently the issue is her heart. We’re talking at least a month, and that’s if she even does get better. Which apparently could go either way. Fuck fuck fuck. I mean there’s the possibility that she can take a turn for the better too and do it sooner than they think. That’s just not what they’re expecting. They were very serious and grim. Which honestly is okay–give me the worst case scenario. Because not once has anyone said this could possibility take over a month to get over. Or that she could fucking die. Kind of vital information.”
I stayed for a few hours and then went back home so I could put J to bed since I hadn’t seen her in 4 days. The next morning I was going to put her on the bus, drop C off at a friends house and then Jeff and I were going to go to the NICU until his mom got into town (she was going to come down for the next week to help with J and C). He would go back and get C and put him down for nap and I would ride back with his mom. Which is what we did…except with another catastrophic conversation. When we arrived at the NICU we found out that Zoe did not have a good night. The lights and sounds were too much for her and she was wearing a mask to help keep the stimulation down. She was now on a ventilator. They had tried to put in a belly button line but were unsuccessful. We had the shit scared out of us when we saw her Wednesday morning.Shortly after Hubby left it was decided that they were going to transfer Zoe again. They were very concerned about the fluid and her heart and thought she may need either a heart transplant or a procedure called ECMO. We weren’t there yet, but neither of these procedures could be done at St. Mary’s, so it was decided once again that it would be prudent to move her now while she was still relatively stable just in case. They were going to send her to the University of Virginia, which is one of the best children’s hospitals in the country. This hospital was an hour and 40 minutes from us, so that meant that I was going to have to stay. I went home, pumped, packed, said goodbye to my other kids yet again and got back in the car. I arrived at UVA around 8 pm and waited for an excruciatingly long hour while they finished up the transfer and got her settled in. I posted this on FB in the meantime, “So I don’t usually like putting my life on FB but Zoe needs all the help she can get. We’re at our third hospital in as many days and things aren’t improving. I have complete and total faith that she is going to pull through–she comes from a long line of strong family members (starting with her sister!!) but anything that will expedite the healing process is helpful. So if you could take a moment to send some positive thoughts/prayers/vibes/whatever you do her way we’d all greatly appreciate it! THANKS!!!!!!”
I spent the night in the hospital in one of their “rooming in” rooms. I found out later what those rooms are for, and had I known their actual purpose I would’ve paid for a hotel instead. One of the resident NICU doctors and the cardiologist on call came in to talk to me about Zoe. They said the transfer went well and they’re just going to monitor her overnight. Once the rest of the team was there in the morning they would make a plan.
The days are all blending together. I can’t even remember what happened on Thursday. I know that I got a spot at the Ronald McDonald house, which was a blessing. I had heard of the organization in the past but had no idea what they did. Turns out it’s an organization that keeps houses close to large hospitals for families to stay for a small fee (only $15/night, and even that is just a requested donation) when their loved ones are in the hospital for long periods of time. This one was two blocks from UVA. It could house 19 families. There was a giant communal kitchen, a living room, a dining room, a basement with a playroom and laundry facilities, and a fenced in back yard. Each room has their own locker for dry goods, a fridge shelf and a freezer box. Plus they provided dinner every night for everyone. I can’t tell you how nice it was to have that to go back to every night–a place to get away from the hospital with actual beds. They are a wonderful organization and an absolute godsend in these situations.
I spent all day in the NICU on Thursday. I was there when the doctors rounded (I certainly hope that you never have to experience anything like this, but if you do rounds are the best thing to be around for) and they spoke with me afterwards. I think at this point things were grim and they were assuming they would have to put her on ECMO. This is what I sent to my friends at 9 pm that night: “So we’re trying not to get our hopes up too much and I’m cautious about even saying anything because I don’t want to jinx it, but Zoe had a good day today. It definitely didn’t seem like that was going to be the case. Around noon they were going to put her on something called Ekmo (sp?). Basically what happens is they take all of the blood out of her body, run it through a mechanical heart and lungs to oxygenate it and clean it and then put it back in her body. Sounds super safe, right?? The process takes anywhere from 1-3 weeks and there are obviously a shit ton of concerns and risks. They decided to go ahead and try one more medication first and it’s working! The level of ventilation has gone down and the O2 they’re giving her has gone from 100% (which is where it’s been for the last 2.5 days) down to 46% in a matter of hours! We breathe 21% oxygen, so that’s the goal percentage. (I’m learning so much lol). So that’s all very good. The Ekmo has been pushed to the back burner from now. However, they may still have to do it. The problem is that the stuff they need to do to fix all the fluid she has (she’s gained 3 pounds, all fluid!!!!!!) will hurt her heart, and the stuff they can do to fix her heart will make the fluid worse. So they finally found a medication that’s helping to treat both. But since her fluid levels are so bad, they may need to end up doing the Ekmo just to remedy that problem. It’s just nice because we’ve talked to three different sets of doctors–surgeons, cardiologists and NICU–and for once they’re all telling us the same thing, are on the same page about treatment and are explaining everything the same way. So I’m finally beginning to understand what the problem is. Getting moved to this hospital was the best possible thing. Either way it’s still going to take awhile and the doctors are all making sure to stress that they’re happy with these results….BUT. It was a super hectic day today. Especially since we went from one extreme to another. I wanted to wait to see if the new medicine was going to work before I sent you an update, and then it was working so well that I didn’t want to leave her side!”
At different points between Wednesday and Friday nights they added a bunch of stuff to her. The poor kid was never left alone for long before they needed to attempt another line or mess with her medications trying to make her stable. After she was transferred they put her on a new type of ventilator that worked by vibration, which was pretty cool. Her belly button line was now in (I think they managed to get that at St Mary’s). She had an IV in her left foot where the majority of her medicines were being pumped through. She was usually on 7-8. The highest number was 10. They put in a scalp line sometime Thursday. They tried and tried for a PIC line on Friday but were unable to get one. The nurse practitioner let me come back while she was trying and I wish she hadn’t. It was completely traumatizing to watch her stick that needle into Zoe’s head over and over and over again but she just couldn’t catch the vein. She was sedated and on pain medication, but she still twitched every time that needle went it. Not something that a mother should watch. And even more importantly, not something that a baby should have to go through. Zoe ended up having a central line placed in her left leg on Friday by the surgeons because they needed more access.
She received a chest X-ray at least once a day to monitor the fluid in her lungs. I can’t even remember when Hubby came up. Thursday morning I think? And then things were going in the right direction, so he stayed until Friday afternoon. I posted this on FB Friday morning: “Zoe is still in very critical condition but they found a medication that is helping and a very serious and scary procedure has been pushed off for the moment, so keep your good prayers/thoughts/vibes coming! They’re working! Either that or the pony I promised her if she gets better…” I had told Zoe that if she pulled through we would buy her a pony. Or whatever else she wanted instead. Hubby wasn’t on board with the idea at first, but by the end even he promised her not just one, but two.
And then my Friday evening friend update: “Okay. Today went well. The fluid in her lungs is starting to go down and her oxygen and ventilation levels are excellent. She’ll stay on the ventilator until the rest of her is better though, so she doesn’t work too hard by having to breathe on her own. The miracle medicine they gave her yesterday is still doing its job. Now the problem is the fluid in the rest of her. She is ridiculously puffy. The hope is that she’s going to start peeing it out. However her urine output hasn’t been that great today. They started her on a few medications that will hopefully help the urine output without harming anything else. They’re tracking her urine every hour and are keeping s close eye on it. If it doesn’t remedy itself then they’re going to have to do the ECMO. I’m not sure what kind of timeline they have to wait and see…I don’t think very long. My guess is they’ll probably know by the morning if this route will be successful. So she now weighs 15 pounds. She’s gained 5.5 pounds in fluid. She looks like a sumo wrestler lol.”Our world came crashing down for the third time Saturday morning. The plan was that Hubby was going to stay home until Sunday and then come out with his mom and the kids so they could finally meet Zoe. Well, not C. He was going to stay far far far away from the NICU, haha. But J was itching to meet her sister and things were going well so we figured now was good time. And then the doctors rounded. I was told that the surgeons, the NICU doctors and the cardiologists were all going to have a meeting to see if anyone had any brilliant epiphanies on a medication that would work for Zoe. And if not this was the end of the line. That there wasn’t anything more they could do for her. This was completely not what I was expecting to hear. And I was all on my own. And not only was I on my own, but now I needed to call Hubby and tell him the news. And then he was going to have to get in his truck and drive an hour and forty minutes.
I’m not a religious person. Before this, I was apathetic about God; I didn’t believe or not believe. I don’t attend church. Don’t pray. After I got off of the phone with Hubby I went to the chapel. I knelt on the kneeling thing (I told you, not religious!), clasped my hands and just said “please” over and over and over. I couldn’t get anything else out.
Hubby arrived around 1230. By that point the doctors had their meeting and decided to try one last medication. And so far it was working. It was keeping her heart rate down while increasing her blood pressure. Things were turning around. The key now was that she needed to start getting rid of all of the extra fluid. She needed to pee it out.
I sent this update to my girlfriends at 8 pm Friday night: “She’s been relatively stable now for about 7 hours. They seem to have found a combination of meds that is working, but they’re literally taking it hour by hour. I asked the cardiologists if it was okay to be feeling hopeful and he said yes, that he’s feeling better too. So we are absolutely nowhere near out of the woods but at least we’re not at the end game like we were this morning. The meds could still stop working at any point. They’re going to completely stop trying to treat the fluid mess. Although it’s uncomfortable and needs to go, it’s not life threatening at the moment. That was the problem yesterday–she’d be stable so they would lower the doses to give her medication for the fluid, and then she would start to crash and they’d take her off of that medication and put her back on the other stuff. So now they’re going to stop treating the fluid and concentrate on getting her stable for at least a full day before doing anything else. But we’re staying positive. And when she turns this all around and I become a religious zealot, you can blame it all on Zoe.”
And things continued to go well. She had a good night Saturday night and a great day on Sunday. In the morning I wrote, “They ended up putting her on the lasik last night (the medicine to help bring down her fluid), which I wasn’t too thrilled about when the nurse first told me since they said they were going to wait a nice long time to make sure she was completely stable. But even on that last night, she remained stable. So it must’ve been the right call! We’ll see…” and “Good news from both sets of doctors! Her numbers are stable so they’re going to leave everything exactly how it is now. The goal is to get her to stay just like this!”