I thought I would share my birth story (and the couple of days afterwards) as there is so much uncertainty about giving birth to a sick baby and negativity about hospital births in general, when we couldn’t have asked for anything better. We were carried through and cared for as we should have been and for that, I will be forever grateful!
My labor experience actually started about a week before Josephine arrived. I couldn’t get up the subway stairs. I could hardly walk. I was only 31 weeks but I didn’t know any different. I just thought it was because Joey was laying transverse – as she had been the whole pregnancy. I had googled and found out that once they start getting bigger, that transverse pressure on the back can make you like this. So I thought nothing of it. I was in a lot of pain and was trying every exercise I could to get her to turn around. I was sleeping in fits of about 20-30 minutes at a time. I was so miserable!
Wednesday became Thursday, Thursday became Friday and Friday became Saturday. I had hardly been out out of bed and could not stand up straight. Bill had a Parish Council meeting on Saturday morning and I had baked cookies for that and that was about it. We were supposed to go to the funeral parlor on Saturday afternoon, but I couldn’t walk properly so Bill went alone and got everything organized for what we thought would be a February funeral. Bill came into our room at about 8.30 Saturday night to help me get up and then my water broke a tiny bit. I screamed as I was not ready to say goodbye to Josephine yet. I remember thinking that this could NOT be happening. We still had laundry to do. We needed to still have more time with Josephine. I was not mentally prepared at all to deal with the idea that Josephine could be coming that night. No. No. No. We called the hospital. Our doctor wasn’t working but the one on said we could come in if we wanted. I didn’t feel like I had to. It was such a small break. But we thought, we better get it checked out. To make it worse, Fresh Direct was getting delivered. I told Bill to call them, tell them they will have to skip our grocery delivery. So he did that. Then my own doctor called us back. She told us not to panic and if we wanted to, we could go to the hospital, but the ball was in our court if we wanted to wait at home a bit longer and see what happened. I was quite happy to deny that Josephine was on her way. So we decided to stay at home and I just hopped straight back into bed. Of course, after Bill’s frantic Fresh Direct call “My wife is in labor, cancel our delivery!” it was so funny to hear him call back within 10 minutes and say “It is ok, everything is fine, you can deliver to us after all!”
Unfortunately, my back pain and inability to walk did not improve over this time. I was pretty much bed ridden and in constant pain and unable to breath. I had a regular appointment scheduled with my doctor on Tuesday but on Monday morning we took our doctor’s advice and got an appointment that day. The first thing we did was preorder Josephine’s casket that morning just because we wanted it at our funeral parlor so it would be ready for whenever we might need it. Then, we called the doctor’s office to get a quick appointment (with some straight talking from Bill about what was going on) and headed up there. I can’t describe the pain but I was hobbled over and pretty much I was done. When the nurses in the office saw me, they knew straight away something was wrong. I couldn’t even talk to them. After a quick check, they called my doctor and she found a spare ultrasound room to check me straight away. She was shocked – I was measuring 42 weeks. Which explains why I had been feeling so average since Thanksgiving. It also meant Josephine stopped swallowing and subsequently, I had developed polyhydramnios. They pushed us over into Labor and Delivery suite and that afternoon, I got some immediate relief. They did an amazing job of draining 2.5 litres of amniotic fluid out of me. It was awful to have to lay on my back, and not move for the whole time that the fluid was draining, but the best part was watching the needle go right in and Joey move her hand up to grab it!
This is what the 2.5 litres of fluid look like –
All of a sudden, I could breathe again. But I started getting terrible pain. The doctors did warn that this may start labor but they checked and they weren’t contractions. So after a few hours of waiting, we got back in a cab for the nearly hour long ride home.
The pains slowly got worse. They had given me some ibuprofen and it dulled things a bit, but nothing seriously. So while I had relief to breathe, labor had started. All Tuesday and Wednesday, I labored at home. I was basically just rocking from side to side. There was one point where I was so tired, Bill said I was moaning through contractions in my sleep. On Wednesday, Bill was at work so it was just Josephine and I having girl time laying in bed, like I had for the past week. By that afternoon, my contractions had picked up significantly. I didn’t want to worry Bill but by the time he got home from work, I knew it was time to go. To make me even more crazy, mum had just taken off from Melbourne to get here. I wanted to hold on so badly so she could be here, but knew we had to go to the hospital.
Bill booked our car service and I paced downstairs in the lobby for about 15 minutes waiting for the stupid car. Bill called them to see what the delay was – the driver had been pulled over by the police and was held up with them. WHAT?! I screamed “Tell them to forget it!” and Bill managed to hail us a cab. This was the worst part of the labor. Seriously. We got stuck in an FDR traffic jam and being squished in the back of the cab for over an hour was pretty much hell on earth. The driver asked us if we wanted him to pull over for an ambulance… as if an ambulance would make it through the traffic jam. We told him to keep going.. then he decided to drive on the wrong side of the road to get us there quicker. Only in New York!
When we got to the hospital I jumped out of the cab just as another contraction was starting and hobbled across the road, leaving Bill there. I couldn’t even move up the ramp of the hospital! An orderly got me a wheelchair and we made it up to Labor and Delivery where they were able to confirm that yes, I was in labor. Joey was still laying transverse though. So in my mind, I had already come to understanding with myself that I would have to have a C-Section. But they just simply said “We’ll wait and see…” and I was quite happy with that view as well! I told them it had been over a week since I had slept and with the procedure on Monday, I was done. They got us straight into a suite (the same one we had been in on Monday) where it was beautifully dark and quiet and I don’t think I even waited for them to ask me if I wanted an epidural… I simply told them!
We were so excited about meeting Josephine, I couldn’t stand it! We were going to see what she looked like, we were finally going to get to hold her and tell her we loved her. Our nurses were so loving and caring to us. I had a pretty long birth plan, just because in our situation, you have to. Nothing was too much for them. There was one area of our plan that they said was going to be an issue for them. That was, if Josephine was not going to be coming home with us, we didn’t want her going to the mortuary from our room. The hospital kindly even worked around that for us. They read and understood everything that we wanted and they did it. And even more importantly they were quiet, peaceful and understanding. We didn’t get any weird looks, instead it was hugs. We were so happy to have them with us.
When Dr Epidural came in, they gave me a self administering one. While it was happening, our nurse was hugging me like I was her own daughter. I think by giving me the self-administering kind, you tend to use a lot less pain relief than a traditional one, which is why I think I was so good afterwards. When all was done, the nurses turned out the lights and between the excitement of meeting Josephine and our weariness, Bill and I both got a little shut eye in what felt like our own little world.
It was about 4.30am when I started feeling pain down my legs. Something was strange and so I buzzed our nurse. One part of the epidural had worn off. After a wait, Bill went back out to ask for Dr Epidural to please come sooner rather than later. Within minutes, Dr Epidural was back and was able to fix it for me so I could get some more rest. By this time I was too pumped. Honestly though, I thought I’d be easily in labor for they whole day and knew by the time our Doctor was in to see us in the morning, they would be calling for a c-section because Joey was still on her side.
It was at this time, that I asked Bill to pull the blinds in our room up so we could see the sunrise on what was going to be Josephine’s day.
We took a picture of that sunrise –
I posted a Facebook update to which one of our friends straight way said “It is the Feast Day of Our Lady of Guadalupe!!” I couldn’t believe it. Our Lady of Guadalupe is the patron saint of the unborn and the pro-life movement.. as well as the Patron Saint of the Americas.
So while I was just hanging out, dozing on and off in our little room of love for Joey, our doctor came in to see me at about 9am. I nearly fell off the bed. Josephine had moved into a head down position and we’d be having her by lunchtime. Um.. WHAT?! How this miracle happened, I have NO idea. Josephine had NEVER been head down and somehow, she knew what she had to do. Our doctor always said even if she was breach she would do a vaginal delivery for us but transverse is another matter. Josephine was looking after me so much I couldn’t believe it. It also seems that the epidural enabled me to totally relax and let labor progress, unlike the days leading up to it where I was so tense and unable to give in. This was all going to be a lot quicker than we thought! At this time, Bill noticed that they had put a white ribbon on the door of our suite so people knew beforehand what was happening in our room.
So with that my next panic was… mum. She didn’t even know we were in the hospital. Bill arranged for a car service to pick her up from JFK and to bring her straight to the hospital. Unfortunately, her flight wouldn’t even get in until 8pm that night. We knew she was in the Delta lounge at LAX but no-one would put us through. We rang LAX, Delta – all explaining what was happening and no-one would help and they would say “Call her cell phone!” as if she just lived in the San Fernando Valley and was coming over for a quick visit. We managed to get through to dad back in Melbourne who managed to connect with mum while she was there and he could at least tell her we were at the hospital. What a mess!
So with that, everyone left us alone again. Everything was so peaceful. If we needed anything, they were there for us but otherwise, our doctor just wanted Josephine to come down in her own time. They were never going to rush anything or force anything. Everything was on Josephine’s terms which was how we wanted it.
By 1.30pm, Joey couldn’t wait any longer. I had requested from the start that I didn’t want any students or others in there with us. But then, our Doctor did say that she had a request from one resident who wanted to see if there was any way she could be with us. I said yes. Mainly because, I want her to always remember Josephine when she is going to be giving that diagnosis to a patient down the road. So that she will remember that babies with anencephaly aren’t monsters or a textbook chapter from their Birth Defects 101 class. They are really little babies that deserve all the love and care they can get in their time with us. I wanted her to be able to say “There was once a couple who carried their baby to term…” rather than scare them with an abortion only option that we originally got. The resident was quiet and respectful and I really hope that through her time in our room, she learnt something to take with her.
It was then time to push. After a few quick pushes, Joey’s head appeared. Keeping ever faithful to our birth plan, the staff ushered Bill over her, so he could baptize her. Bill was AMAZING. We used a holy water bottle that we had bought at Maria Maggiore in Rome and holy water from Queen of All Saints. Bill calmly performed the rite and then with one other push, out she came!
Josephine Martha Blevins was born! When they carried her over to the little bench where she would be swaddled and her head would be dressed, she let out the most gorgeous little cry that was loud enough for us all to hear. Then, within a minute, she was over and snuggling with us.
This was our first family photo together –
One thing I wanted was for Bill to get as much time as possible with her. I had been spoilt with 31 weeks and 4 days of Joey and now, it was his turn. It was daddy and daughter time and he wouldn’t let her go.
Another aspect that I didn’t appreciate until afterwards was my doctors did the best job when it came to delivering the placenta and afterwards – I felt AMAZING.
So, our little Josephine was born alive but we didn’t know how long she would be with us. This is when Dr Parravicini came into play. Or as we call her ‘Zia Elvira’ as she was from Italy and became like family to us. We were left with Josephine and our nurses and she would come over every 20 minutes or so to check her heartbeat. They also called a priest for us who came and blessed Josephine and would look after getting her baptism certificate organized.
The time with Josephine was a blur. I couldn’t believe that was her and she was really here. It was just so exciting and I kept touching her nose and her cheeks and feeling her gums and trying to remember every bit of her.
I managed to FaceTime dad and introduce Josephine to him while he was sitting at the kitchen table and just to let him know that all was ok. I kept telling her we loved her, that she is our little girl and in a way, it was sad that we also kept waiting for the ‘nod’ from Dr Parravicini that she had gone to heaven.
That time came at about 3.11pm. With one last check with her stethoscope, Joey’s Zia Elvira confirmed that her heart was no longer beating. Josephine was now a saint and we were left with her in our arms, in our huge room that we saw her sunrise that morning.
Then, it was just us. Joey, her mummy and daddy and… quiet. Bill made some phone calls and went down to get me some food and it was kind of like a case of “Oh wow… what now?” One of our nurses also came to have a chat to us. She said that morning, she had planned to call in sick. She had so much holiday planning to do and everything was out of order at home. But something told her to go into work and she did. She said that after over 30 years of being a labor nurse, Josephine’s birth had changed her. The only other baby with anencepahly that she had seen be born was one that was burnt to death as a result of a saline abortion. This changed everything for her and I was so thankful she was there with us. She hugged us so much and I love knowing that she will have a beautiful memory of a baby with anencephaly. One that has a button nose, gorgeous toes, rosy cheeks and the cutest lips ever.
They followed word for word on every single one of our wishes. From peace and quiet to just letting us be. This became evident when one of the nurses came over and apologized as we had in our birth plan that we would love to have a lock of Josephine’s hair cut. Joey hardly had any, so I didn’t think anything of it. Our nurse apologized because she couldn’t get any hair. Yes, they were THAT caring. We even had them come in and ask our permission to take all the dirty linens from the room and clean it up – then I realized I mentioned in our birth plan I didn’t want people coming in and out of room all the time!
Two volunteers also came in to take plaster imprints of her hands and feet. They made one for us and a set for both of Josephine’s grandparents. We also took a little plaster imprint to use on her memory box.
Josephine got her first visitor at 5.30pm. The amazing Dr Nolte, my doctor from the Gianna Center had come straight up to see us. My heart exploded. She was the one person who ensured that on that day after diagnosis, we would never be alone. She is amazing and we will never, ever forget her for the care and support she provided us when we needed it.
There wasn’t a private room ready so they kept us in the suite which was our little home with Joey until her next visitor. Our driver had picked mum up from the airport and called Bill to let them know they were downstairs. Mum ran straight into the room to give hugs and kisses to us and Josephine. Bill managed to snap a photo of mum meeting Josephine for the first time –
They then moved us down a few floors to a different area. We weren’t put into the normal mother and baby wing but I held Joey the whole time as we rode down the elevator and found our room. We bathed little Josephine in that room and got to see her without any bandages or anything. I bought all our own baby stuff for her as I wanted her to smell like we wanted and without any random hospital brands. Her skin was soft, she smelt SO good. She was so tiny and SO girlie. Seeing her little feet up close was like nothing else. We got her into her nightie and swaddled her up and put her in her little cot and kept her cosy with a crocheted rug. I was absolutely starving thankfully mum had her suitcase of Australian supplies that she bought over for us so I quickly ate Heinz Oops out of the can and ate some lollies. After 24 hours of flying, Mum slept that night on the fold out chair, Bill was exhausted and took another hour long cab ride home to get a good sleep in our bed and I climbed into the big hospital bed that was super comfy. We had a three generation girls sleepover that night and mum kept checking on Joey through the night.
The next morning, I was beeped awake by the alarm on my drip (I had been super dehydrated and I think that drip was part of the reason for my amazing recovery!) I was still so in awe – on one side was Josephine. Then on the other side was mum.
Here we are that morning –
I was feeling amazingly good and really wanted to get out of the hospital as soon as possible. We used the morning to take so many pictures of Josephine. We got her out of her nightie and into the little white gown I had bought for her.
Here are two of my favorites –
Bill had contacted our funeral home and let them know that she would be needing to be picked up from us today. We had visits from social workers, doctors and more nurses. I hate to say how good I felt but honestly, compared to the two weeks leading up to the birth, I felt amazing. I actually still feel guilt at feeling so, so good afterwards. I had been in so much pain and so physically drained for so long that all of the love and excitement of meeting Joey and then not being in pain anymore meant I felt like ‘me’ again.
At about 1 o’clock I was just holding Joey and we heard a knock on our door. It was Ron, our funeral director. We had planned everything but I think even for them, nothing prepared them for a little baby.
Handing over Josephine was probably the worst moment for me. I still get a gut wrenching pain when I think about it. Like my body hurt handing her over. It was like a bad, dull tummy ache, but all over my body. We knew she had to go but I didn’t want to let her go.
This was the last time I ever held Josephine –
Ron held her like any daddy would a little baby. He later told us, he wouldn’t even put her in the back of their van. He nursed her the whole way home back to Brooklyn.
With Josephine gone, we wanted out of the hospital. It was just a couple of more hours while they made sure I really was ok and then we could go. Walking out into the air felt surreal. Here we were back in a cab. Mum’s luggage, our suitcase, lots of paperwork and no Josephine.
I couldn’t wait to get in my own nightie when I got home and I did just that. I couldn’t fathom that it was Friday night but I couldn’t wait to crawl into my own bed. We were all exhausted. I think we ordered some Chinese food. But after that, I slept and slept and slept. So did mum. So did Bill. Again, I still feel guilty because I felt so good in myself and was finally no longer in any pain and yet, Josephine was no longer with us so at the same time, I still had that aching feeling.
On Saturday, the funeral home allowed us to spend time with Josephine. Stepping out with mum and Bill was weird. It had just started snowing. Bill snapped this photo of mum and I as we were walking there. Yes.. Joey was just around the corner from us.
We spent a half an hour with her and got to see her in her beautiful casket and kiss her even more. She looked even more like a doll that I remembered from the day before. We made sure she was cosy and we cried and cried and cried. The only time I had cried more was on her diagnosis day. It was so final but it also meant saying goodbye to what had become our life for the past few months. Everything had been about Josephine and everything just went so perfectly – we couldn’t be anything else but thankful for having her in our life.